Hello
all those few left reading the blog! It's been a while since I've chatted with the few of you. Thought I would update you all on the "littles", progress and life in it's hum drum way.
We have been very upfront with our "littles" special needs, and have some news to report on our caboose and Tim's up coming appointments!
Let's start with our caboose and cutie pie!
Close your eyes and remember WAYYYY back to her referral post, or keep those eyes open and just search the index and re-read??? Kate's medical special need is/was? (both?)... ah hum, IS Thalassemia oh..... and she has an "outtie" (an umbilical hernia).
Thalassemia is an anemia blood condition that can't be improved with diet, medicine or supplements. Without sending you through a hematology lesson, briefly there are two types and three degrees. Two of the three degrees will mean Kate will need a blood transfusion as often as every 23 days for life. Kate's medical referral file indicated she had Alpha Thalassemia and the two hematologist both rendered their opinion as such: Because she has such a critically low hemoglobin (severe anemia) she is most likely in the major category(that's the one that needs monthly transfusions). GULP!! I had prayed for a little girl from God. He knows me best, so since I already have Tim and his broken heart, maybe the baby girl would be somewhat healthy or at least easier??? I trusted HE knew what he was doing and had a gut feeling things would be manageable once we finally have her home and evaluated by an American specialist!
An aside here.....I had a normal, human reaction to trusting at this level! Everything said "this baby is gonna require a lot Cindy!" I tried to trust-ed ....and in my gut, I had a feeling....whatever that means....things would be alright with her despite the overwhelming evidence to the contrary!
Fast forward to January 2013. Kate was seen by the hematologist at the Arkansas Children's Hospital. Many vials of blood and a return trip for more blood to be drawn, oh and TWO long months later (her analysis had to be done out of state, not much Asian Thalassemia in Arkansas) we are finally with a diagnosis! Whew, that was a great patience lesson!
This cutie has Beta Thalassemia MINOR!!! This is the most mild form, but most importantly although she will be anemic her entire life, she will never require a blood transfusion ever!! Now her outtie, may or may not need a repair one day....but that's so doable!!
NEXT UP.....Tim and his heart troubles!
Tim saw the Cardiac surgeons also in January. He had an initial echocardiogram that was CRAZY long for a 5 year old wiggly boy, but he somehow survived it! The doc's were perplexed and somewhat speechless where all is heart anatomy is/was/mayneverhavebeen??? So the thoughts were
1. Schedule a cardiac catheterization soon, to figure it out and find some missing parts!
2. Before any cardiac cath can be done he needed to bulk up nutritionally. Seems the orphan diet is NOT so good??? Odd, I know, right????
3. Tim had two teeth that had HUGE hole's in them. Rotten teeth mean bad bacteria near the heart, so that must be resolved before they can do any heart procedure.
So off to the dentist and grocery store we went. One pulled tooth, one filled tooth and 100,000 chicken nuggets later......We have his heart cath scheduled for April 9. So, we now must wait for the answers, and a plan, for his next open heart surgery. Which will help bring more oxygen to those outer extremities. A great visual aid, check out his hands in the "airplane flying through a rainstorm" pic below.
And NO it is not that he's a filthy 5 year old boy!
Life with a toddler....
So, what's it like to view life with a toddler in your arms? Recently, Beau had an induction ceremony. Kate, was being Kate, and talking whenever she felt like it.... and then shushing the speaker for being so rude! B Cuz she's 2 and oh so cute!!! So mommy and Kate went to look at the back wall of the auditorium for a little while! Our view of Beau getting his certificate is below. It really sums up how I view most of life these days. Busy, Busy, Busy baby girl!
Ok, in all fairness to the grandparents.... the shot Bryce got, from his cushioned seat, in complete silence, hearing not only every word spoken, but Beau's name being called.....I might be a little jealous, just a bit.....but one day my velcro baby will release from me and AHHHHH, I will take a deep breath!
And this past week I became older....actually ANCIENT! No, really the proof is below. Thank you for the cake decorations Wes, only you could get away with getting so carried away with it!
I'm curious if that's my real age???
in dog years?
or dino years?
Most mornings I do wake up feeling around 41,111,111....good golly maybe it's correct!??????
AWEEEEEE!
Cutest Monkey EVER!
Learning all things Mickey Mouse!
